First Anniversary of diagnosis disappointment.

[Dolbycat]

My GP refereed me to the hospital breast clinic in December 2016, after the routine mammogram, blood test, ultrasound and 3 biopsies were performed, I was given the great news just before Christmas 2016 that it was not cancer, but probably lymphedema or an infection of the breast. I was give an appointment to attend clinic again after the New Year. My symptoms had not improved and had not responded to a course of antibiotics. After further investigation in January 2017 using MRI, and 11 biopsies guided by ultrasound my cancer was properly diagnosed. Eventually I was given the devastating diagnosis of aggressive stage 3 , triple negative, inflammatory breast cancer in February 2017. I was told the cancer was very rare and difficult to diagnose by the oncologist and breast surgeon. The day after diagnosis I was sent for I was sent for the sentinel node biopsy operation which proved positive for spreading to the lymph nodes. After Chemo, mastectomy surgery with full clearance and Radiotherapy which finished in October 2017 I was handed over to the nurses team for future follow up appointments.

The Anniversary came around early this year and I was just given a mammogram appointment for my remaining breast in January. The appointment lasted less than 10 minutes and I have no further appointments now until April for a moving forward talk with the nurse. I do not have a lot of faith in the mammogram screening after the experience of December/ January 2016. I asked if there was any further checks but I was told this is all I need.

I am pleased to be moving on and don't want to be constantly at the hospital but I also want to be sure that the cancer is not returning. I expected to have a more thorough check up after the 2 month delay to diagnose the cancer back in February 2017 and the type of aggressive TNBC which means I can't have the routine Tamoxifen tablets. I have only been able to have bisphosphonate tablets to protect my bones.

Am I being paranoid or should there be more on offer?

I have posted in the past and had fantastic support and advice from members which helped me through last year. I hope you are all recovering well and moving on to better times. Best wishes to you all who are still going through treatment. I am hopefully looking forward to a better year and moving forward to return to work.

[Lainey66]

Hi Dolbycat. Great to hear that you are clear. I do however totally understand how you feel. Your diagnosis is virtually the same as my own. I had a double mastectomy as I feared it would return to the second breast. Five weeks after surgery I was given the "all clear" from the surgical oncoligist as there was nothing left for him to keep an eye on, so to speak. However I still had to go to the medical oncoligist. He informed me that i had residual cancer. These are cells less than 2mm that can only be diagnosed in tissue removed at surgery. They travel via the lymph nodes into your system. I had to then under go a further 6.5 months of aggressive chemo followed by 25 sessions of radiotherapy. Once finished I saw my oncologist every three months for a year. My last one was 19th Sept 2017 where he informed me that he did not need to see me for a year. I was and am delighted, but like you very wary due to tnbc being so aggressive and liable to return. I aired my worries to my GP who has been amazing and keeps an eye on me and does my bloods every three months. Perhaps speak to your gp and see if they will consider helping you to alay your worries and fears. Lainey66 xx

[Dolbycat in reply to Lainey66]

Thanks Elaine. I have read your blog with great interest as I know we have similarities. I am so pleased that your follow up checks have been good news, you certainly deserve it after the journey you have endured. Well done!! I have decided to check with my GP tomorrow as I have a follow up appointment after falling down stairs 3 weeks ago, I landed on my surgery side and back. It was my own fault, wearing slippers that were too big. I just need to have some reassurance, I expected the team to be more cautious after taking two months to diagnose me last year.

[Debster2016]

Hi Dolbycat I too am surprised there isn’t a more thorough follow up sequence for cancer patients I really am. Unfortunately the nhs is reactive and not proactive - my words - and the best results seem to come from early diagnosis. I believe there are other tests that can be done lik3 bloods taken and cancer markers tracked but I’m not sure that applies to tnbc.

I had ILC invasive lobular carcinoma which doesn’t present as a lump so can be difficult to see / find on a mammogram but mine was, first time round. Perhaps it’s simpl6 down to the person who reviews the mammograms and perhaps you can ask for a second opinion thro the ban and or hospital?

Failing that I have great faith in my gp (so far) so that would definitely ask for help from there too.

Wishing you good health, a clear scan and reassurance.

Best Deb xx

Ps I just had my first mammogram post treatment, my all clear came a week later 👍🏻👍🏻

[Dolbycat in reply to Debster2016]

Hi Debster, thank you for your message. You are right to say "the best results come from early diagnosis" that's why I am concerned. I have tried speaking to the BN but no joy so seeing my GP.

Congratulations on your mammogram results, you must be thrilled. may your good health continue.

[TruthisGreat]

I'm sorry for what you've been through. It's all just terrible.

I know of two sources for triple negative. bioresearch.com. Call Chris Rathe and talk to him about their program.

There is also a clinical trial starting in Cleveland Ohio through Dr Jason Williams in Alabama for triple negative.

It will be free to learn about them both. Nothing to lose. Good luck!

[Dolbycat in reply to TruthisGreat]

Hi TruthisGreat, thank you for the reply. I will look these links up to see what it's all about. I live in the Uk but interested to know any news regarding triple negative. I am travelling to the US next month to visit my son now that I am ok to fly.

[TruthisGreat]

Good to know. Do check the one at bioresearch. Trials usually pay for transportation so I guess it wouldn't hurt to look it up...

All the best to you.

[Iknitandstitch]

Hi

Don't know whereabouts you are in the UK - just thought is there a Macmillan centre near you? I have one near me and they are fantastic so knowledgeable and friendly - and .ca sometimes suggest things and point u I the right direction.

I am knitting Easter chicks for them to sell and raise money photo she the clutch of chicks are done

Huge Diane

[Dolbycat in reply to Iknitandstitch]

Thanks for you message. I have a McMillan nurse she has been very helpful. I did question her about any other checks but she ssid the mamogramme was all on offer. I spoke to my GP who recommended contaction my surgeons secretary which I did on Monday. She was going to email my breast surgeon, I am waiting for the response.. Your chicks are a lovely idea, they should raise money. The charity is fantastic, the have been very helpful and supportive. Take care. Xx

[CancerkickerKathy]

I too was stage 3 tnbc. I do see oncology every few months but all they are doing is checking blood. No scans or anything unless a problem presents. I also have concerns about this approach.

[Dolbycat in reply to CancerkickerKathy]

Hi Kathy, I spoke to my surgeon after being discussed at their MDT meeting following my concerns, she confirmed that an MRI is not necessary after all the treatment I have already had. They only offer MRI if the patient has dense breast tissue which makes mammograms hard to read. The onus is on the patient to self check and notify any changes. She explained that they have an open door appointment for the years following treatment to deal with any worries or concerns. She also explained that if any new cancer does present it will not necessarily be the same type as my primary rare cancer, as the chemo didn't just treat the breast cancer , it treated the whole body to reduce the chances of cancer returning. I did feel more confident after she explained but like you I did expect more. I have a follow up appointment with the nurse in April as a continuation follow up. Then I see my surgeon again in May, this is mainly to discuss reconstruction which had to be delayed. I am giving myself some time off from more surgery until next year as my mastectomy site is still healing. I have recently arranged to return to work and get some normality back to my life. I am taking a holiday first to visit my son in America. Hope you get answers to your questions and feel calmer and more reassured with your responses.

[CancerkickerKathy in reply to Dolbycat]

Thank you for sharing your info. I know one of my Docs said cancer can be there and take 5 years before it shows up on a mammogram. I do have dense tissue. Well at least I did before they chopped them off. So I guess self exams and blood work is it unless there is a problem. Hopefully we can all get back to normal.